Since I received my diagnosis of six months to live last month, I’ve been trying to do just that — live. A good friend of mine stopped by yesterday. We discussed how hard it is for people to wrap their minds around my prognosis. I’ve shared quite a bit about the past four and a half years of cancer treatment, so I’m treating this new development the same. I don’t shy away from divulging the bad, but I tend to focus on the good things I’m clinging on to. Minus the eyepatch and my bald head (back to wearing wigs sometimes), I look pretty normal, which makes harder for people to grasp what I’m living with.
Some days I feel relatively good, other days I can barely get dressed by myself. Leptomeningeal disease (LMD) is weird. Only 5% of cancer patients develop it and there is no cure. I don’t know much about it, but it seems to mostly afflict breast cancer patients, not colorectal patients. Lucky me. After careful consideration, I’m opting not to undergo chemo. The available drugs aren’t that effective. I’d have to get a hole drilled in my skull to inject chemo directly into my brain. My oncologist said the side effects are brutal, including uncontrollable nausea, diarrhea, and possible paralysis and meningitis. Why take the chance? I’m already miserable enough.
Anyway, back to living. This is my first time in four and half years that I’ve slowed down and given myself time to focus on just staying alive. School, work and travel kept me busy and sane. But my body. can’t keep up with the physical activity I used to enjoy, like roller skating, hiking, and swimming laps 2-3 times a week like I’ve done for the past year. Now, I get out of bed between 10am-noon to down a steroid pill. I’m still taking headshot clients, but I stopped my freelance writing gigs. It’s been a balancing act of taking responsibilities off my plate while maintaining an iota of normalcy. I also dropped out of school. It pained me to do that, but it didn’t make sense to pursue a degree that I won’t live long enough to finish.
Thomas and I were very fortunate to get back to Arizona this summer. We stayed for 10 days instead of six weeks, but it was good to return. It was a whirlwind once we got back from that trip. I contracted Covid, got my bad brain MRI results, and realized I had to drop out of school. That was harsh to deal with all at once, but I’m used to it at this point. I usually get the worst of the worst news in the fall for whatever reason, so I’ve come to expect it.
So, what’s next? I’m taking life moment by moment, day by day. I’m trying not to play out “what if” scenarios in my head. I’m not making plans. I’ve got a few small photo and writing projects; my palliative care doctor told me to keep engaging both sides of my brain. I completed 10 rounds of full brain radiation a month ago. One of the side effects is short-term memory loss, which I haven’t experienced yet. It’s probably coming, so I’m trying to do things before I start to forget.
Oh! And I have a chapbook coming out with Belle Point Press, which you can pre-order here. “Cold Comfort” is an essay collection with accompanying photos. One of my post-graduation goals was to do a book with words and images, so it’s nice that the project is coming to fruition. I just hope I live long enough to see it in print.